Tag Archives: Disability

Sorry Not Sorry

Today I am not sorry I suffer with mental health issues. I didn’t choose them, no matter what some people think. I don’t necessarily have a bad attitude – and when I do, it has nothing to do with my mental illnesses.

Today, I”m not sorry I am a trauma survivor. I didn’t choose to endure the traumas I endured. These traumas and the resulting mental health symptoms do not make me weak. They do not make me not resilient. People can be resilient and suffer from mental health issues or trauma-related symptoms nonetheless.

Some people choose to believe that the fact that I don’t live up to my intellectual potential, means I’m not resilient. They reason that, if I were persistent enough, I would have finished university and had a job by now. They also judge my lack of persistence in these areas as a sign of a bad attitude.

Today, I’m not sorry I live with multiple disabilities. I don’t care whether you consider these disabilities valid or not. The people who judge me, think I use my disabilities as an excuse not to fulfill their expectations of me. They don’t realize that it’s my life and I have absolutely zero obligation to fulfill their dreams for me. No, not even when these people are my parents. I have no obligation to prove I am worthy of life.

People who don’t know me well commonly assume I must be very resilient for the mere fact that I’m alive. I didn’t use to like this attitude either, but then I read today‚Äôs post by carol anne, which inspired this post. Both of us were born prematurely. Both of us suffer with lifelong disabilities as a result. Both of us endured childhood trauma. Doesn’t the fact that we survived and haven’t succumbed, mean we’re pretty resilient? I think it does. We’re badass!

To Live a Meaningful Life

What does it mean to live a meaningful life? Does it mean to be successful? To contribute to society? I used to think that’s what it meant. I was raised with the idea that, in order to be worthy, you needed to contribute. Many people sitll hold this opinion and it creeps up in my mind every now and again.

Since I’m nowhere near successful by non-disabled standards, does this mean I don’t live a meaningful life? Especially since I used to conform to these non-disableed standards? Until my crisis of 2007, I lived a pretty normal, fulfilling, successful life. Now I seemingly don’t.

I mean, I need considerable care. I’m still not fully convinced that I even contribute to my marriage, even though my husband says I do. I don’t work. I live semi-independently, but this is so hard that I am applying to move into long-term care again. I do day activities at a place for people with severe intellectual disabilities.

Yet if I say this means I don’t live a meaningful life, am I not saying the same of those other people at my day activities place? They don’t contribute to society in any kind of tangible way. Yet they spread kindness and smiles all over the place.

Can’t I redefine meaningful living in a similar way that the National Federation of the Blind wrote a new slogan? They used to say that, with proper training and opportunity, blindness can be reduced to a physical nuisance. They also used to say that the average blind person can do the average job as well as the average sighted person can. This was significantly dismissive of those with multiple disabilities, or those who for any other reason couldn’t contribute as much to society as the average non-disabled person. Now they say you can live the life you want, blindness isn’t what’s holding you back. This is more tuned into the wishes of people to live meaningful lives in such a way that feels good to them. It moves away the focus from the need to contribute and onto the wish to fulfill one’s own dreams. How wonderful!

Linking up with Stream of Consciousness Saturday. The prompt for this week is “Mean(s)”.

Mental Health Ramble

I want to write, but I’m feeling stuck. A thousand thoughts are going through my mind. I’m not even sure that I’m being myself as I write this. Who am I, anyway? I don’t know. I can pinpoint it fairly clearly when I’m in one of my ego states. When I’m not, I doubt everything.

I would’ve had DBT yesterday, but my nurse practitioner was off sick. The psychiatrist would be calling me, but when she did, I pushed the wrong button. She left a message saying she wanted to call me because my nurse practitioner is off sick, but also to discuss “how things are progressing”. I’m guessing she’ll tell me off for wanting to go into supported housing, for feeling happy in developmental disabilities services and for not being sure I feel mental health treatment is benefiting me.

Right now, I’m not sure I care. I’m not sure whether I want to go the route my psychiatrist is wanting me to go, which is do DBT for now and be put on the list for trauma diagnosis. I don’t even know for sure whether my trauma symptoms are severe enough to warrant treatment, or whether I want them to be. Usually whenever I doubt this, it’s a sign that some memory or new aspect of myself is surfacing. I have no idea this time.

I feel, above all, that what I need is safety. This means being assured that I get the support I need. I’m mot sure my psychiatrist is of that opinion too. She told me at our last meeting in early October, that she felt day activities were underserving me, not challenging me enough. I panicked, called my support coordinator, who called the consultant psychologist involved in my case. She then E-mailed my psychiatrist. Maybe the way I did it, it feels as though I’m trying to use the cosultant to tell my psychiatrist off. That wasn’t my intention.

That being said, I do feel much more comfotable with my support team from the intellectual disability agency than with my treatment team from mental health. I don’t know whether that means I’m too comfortable being taken care of. I don’t know whether I care.

Anyway, my psychiatrist will be calling me again on Tuesday. Then I’ll be at day activities, so if I feel distressed by something she says, I can go to one of the staff.

CP Conference Last Saturday

So I attended the Netherlands’ national conference day on cerebral palsy on Saturday. Before I went, i was incredibly scared. Would I be able to connect to other people or would I be left on the sidelines all day? Would there be people willing to help me navigate the school building in which the conference was being organized? Would I arrive on time? But my main worry was related to my own diagnosis of cerebral palsy, or rather the lack thereof. You see, I was never told that I have CP by my parents and was too young to understand medical jargon by the time they stopped taking me to specialists. Maybe my parents didn’t even know, as doctors do not always clearly communicate and my parents were mostly looking for reassurance.

My GP also was a bit vague when I asked him last year, citing a probably relatively recent letter saying that I had acquired brain injury. Now I do happen to know that doctors disagree on whether brain injury acquired shortly after birth counts as ABI or a diagnosis of CP or the like should be made instead. So I’m a member of Facebook groups for both CP and ABI. However, ABI is a diagnosis regardless of symptoms and CP requires mobility impairments. I wonder therefore, are my mobility impairments severe enough to count?

I arrived at the school forty minutes before the doors were officially open, but someone took me to a chair anyway and gave me a cup of coffee. Soon, a man I’d been talking to via Facebook messenger arrived too and we sat and chatted some.

Gradually, other people arrived and it was soon time for the official opening speech. This was partly about Steptember, a movement challenge to collect money for research on CP.

Then, a neuropsychology professor spoke about the effects of movement and mental or physical effort on cognition in people with and without CP. It turns out that effort, whether that be mental or physical, strengthens brain connections to the frontal and parietal cortex, which are responsible for higher-order cognitive functions such as planning, organizing and impulse control. He also briefly touched on the effects of music, which can also help strengthen these connections. In short, moving and exerting ourselves as much as we can within the limits of our CP helps our cognitive functions. Of course, past age 30, these brain areas no longer grow and actually decline, but still exerting yourself enables you to learn more effectively regardless of your age.

After this, you could choose to follow a workshop session. The one I followed was on overload. This was a bit of a chaotic workshop, as the presenter allowed for questions while presenting. I am quite familiar with overload, as a person with autism, but I loved to explore it from a CP perspective. I mean, physically I do have some more limitations than those without CP. As a result, walking may give me energy, but it also costs me energy more so than it does non-disabled people. This was rather interesting, because I often tend to sometimes give everything and more of myself physically and other times I tend not to bother. Something the presenter said that really struck a chord was that mental overload can be counteracted by physical activity and vice versa.

In the afternoon, we could also pick a workshop to follow. The one I chose was on nutrition. A registered dietitian had developed nutritional guidelines for children and adults with CP. Topics that were discussed included underweight and overweight. The presenter said that, as a general rule, people with CP need fewer calories than those without CP. The reason is that, even though our movement costs more energy and hence burns more calories, we tend not to move as much.

Another topic that was discussed was swallowing difficulties. Did you know that up to 99% of people with CP, even those with mild CP, have swallowing issues? I didn’t. This was so validating, because I happen to have some rather significant swallowing issues.

Other topics of discussion included reflux, constipation and bone development. There is little research into these, as particularly constipation and osteoporosis are common within the general population anyway.

Overall, I loved this day. It was also very validating. Not only did no-one say I don’t look like someone with CP, but I actually met several people who are at least as mildly affecte as I am.

Confessions of a New Mummy

Dreams I Had for Myself as a Child #Write31Days

Welcome to day 18 in #Write31Days. Today’s post is all about dreams and life visions. Specifically, I am sharing the dreams I had for myself as a child.

The first dream I remember having about what I’d be when I’d grow up, was a writer. I may’ve said as a KIndergartner that I wanted to be a princess or whatever, but as soon as I could write with some confidence, I wanted to make my career out of that. I remember my parents telling me pretty early on that writers usually don’t make a living writing, but I didn’t care.

As I said before, I started out wanting to write fiction. I didn’t keep a journal consistently until I was thirteen and fiction was all that I knew before then. I didn’t get access to the Internet until age fifteen, but by the time I had an Internet connection, I was hooked on non-fiction.

Another dream I had for myself as an older child and teen, was to become a teacher. My ideas varied as to which grade or subject I’d like to teach. I definitely looked up to my teachers, so it’s no surprise I wanted to be one.

When I was around twelve, I started to deveop a dream of becoming a psychologist. I wanted to help children who were likely to fall through the cracks, as I had a feeling I was. I started hoping every episode of my parents’ favorite news program had a feature on kids with psychological problems. Once, there was an episode on about autism and I was hooked. This was nearly ten years before my own autism diagnosis. I had a feeling I was somehow like the boy in the program. Similar with a seventeen-year-old girl who was being restrained in a psychiatric hospital in around 1997. She was too smart for intellectual disability services but didn’t belong in psychiatry either. Something clicked with me, but obviously I couldn’t put my finger to it. I still really can’t.

When I was sixteen, I developed another dream. I wanted to study in the United States once in college. I would be majoring in American studies at university in Nijmegen, which'd offer motivated, talented students the opportunity to study in the U.S. for six months in their third year. I was at the time pretty sure I'd be talented enough. I loved reading up about American cities on City-Data.com.

Looking back, obviously, I didn’t make any of my dreams come true. I write, but not for profit and I don’t intend on it ever at all. I have some education in psychology, but am nowhere near a degree.

At the back of my mind, there always was that seventeen-year-old girl in the isolation room in the psychiatric hospital. I’ve not become her either, but I’ve come close. Then I rose up above my fate and now I’m an advocate. I’m happy as I am now.

Four Skills I’m Pretty Good At #Write31Days

Welcome to day 15 in my #Write31Days challenge on personal growth. Today, I have another list post for you. One of Lisa Shea’s journaling prompts on self-esteem has us write about our skills. What things are you pretty good at? Here goes.

1. Writing. I’m by no means a bestselling author – I have only had one piece of writing published in a book so far. I also make a lot of typeos in my writing. Overall though I consider my writing to be pretty good.

I started writing at about eight-years-old, wanting to become a children’s fiction author once I’d grow up. Now my husband is one of my worst critics when it comes to my children’s fiction, saying my stories aren’t very imaginative to say the least. Then again, when he compliments me on my blog posts, I take it all the more to heart.

2. Calendar calculation. You didn’t know that’s a skill? It is! My husband can’t tell whether October has 30 or 31 day without looking at the calendar, so I’ve got to believe that calendar calculation is a skill. It refers to being able to tell what day a given date in the past or future falls on. I’m not nearly as good at it as I used to be some twenty years ago, but am still pretty good.

3. Researching topics of interest. When a topic captures my interest, I can research it for days on end and will quickly get to know a lot about it. As such, I know a lot about psychiatry – more than some so-called professionals would like me to know. The flip side si that I cannot convert all my knowledge into practice. For example, I know a lot about soap making, but after those first few attempts, I haven’t tried making soap on my own again.

4. Relating to other people in a unique way. Particularly to people with cognitive, intellectual or developmental disabilities. I consider myself pretty good at relating to my fellow clients at day activities. As such, I have been known to come up with some ideas for sensory activities.

What skills are you pretty good at?

A Letter to My Younger Self #Write31Days

Welcome to day nine in my #Write31Days series on personal growth. Today, I chose yet another prompt from The Self-Exploration Journal. It asks what one piece of advice you would give your younger self if you could go back in time. Ths question couldn’t be more timely, as I’m facing a lot of regrets from the past right now as I face the decision to apply for long-term care. I am spinnning this questioon around a little and going to write a letter to my younger self. I don’t have an idea for the age of this younger self, but the piece of advice should be the same anyway.

Dear Younger Self,

This is your 32-year-old self writing. I want to reassure you that I see you. I see your struggles for autonomy, for self-determination. And yet, I see your struggles with your limitations. You have yet to come to terms with the fact that you’re multiply-disabled.

I see that peope try to control you. Your parents consider you worth parenting only so long as you prove that you’re going to give back by contributing to society. Your support staff try to please your parents, sending you out to live on your own despite knowing this isn’t in your best interest. Your psychologist in Nijmegen, no matter how helpful she is in some respects, still doesn’t provide you with the opportunity to go into the right type of care. She, like eveyrone before her, values your intelligence over your need for support. Your psychologist in Wolfheze blames you. She robs you off your last bit of self-determination by kicking you out of the institution without proper after care.

I want to reassure you. I see your needs. I’m fighting for them to be met. I don’t have enough support yet, but I have people around me who are fighting for it with me. I can’t promise you that you will ultimately get into long-term care, as that’s up to the funding agency to decide. I can however assure you that I’m fighting for you.

If there’s one piece of advice I could give you, it’s to fight for yourself. No-one can live your life but you. You don’t owe your parents anything. You’re past that point. Care staff do only their job. This isn’t to discount the good work my current care staff do, but it’s just that, work. They will eventually fade out of our life. Even your husband, the only person who will most likely stick by you for a long time to come, doesn’t have the right to control you. I know you want to please him, because you love him, but that is different. Pleasing your husband is founded on love, not authority, and it is mutual. Even so, your husband does not live your life. Ultimately, the only person who will live the entirety of your life with you, is you.

I don’t mean this to criticize you at all. I see how hard it is for you to stand up to controling people. But you’ll learn to do so in time.

With love,

Astrid

What one piece of advice would you give your younger self?

My Heroes #Write31Days

Welcome to day two in the #Write31Days challenge, in which I share 31 reflections on personal growth. Today, I am going to write about my heroes.

Heroes can be ordinary people or they can be celebrities or historical figures. My first hero is someone I knew in real life: my paternal grandmother. She sadly passed last May at the age of 94, but she lived a positive life up till the last days of her life. She was one to rarely if ever complain. Even when in severe pain, she remained positive.

My grandma married my grandpa in 1948 and gave birth to five children, my father being the eldest. When the youngest was eighteen, she divorced my grandpa. She was fiercely independent, getting a career for herself as a social worker. She traveled a lot and had lots of hobbies. My grandma’s motto was “Do what you want, as long as you don’t bother me”. I am not nearly as resilient as my grandma, but I’m trying to be.

My next hero is someone I never met in real life and never even talked to. She is Cal MOntgomery, a disability rights activist. About fifteen years ago, she wrote an article in Ragged Edge Magazine that changed my life. She described for the first time what it is like to live with the identity-destroying effects of ableism. Her internalized companions Mary and Bruce are in many ways similar to my Jane and Carol. Read this if you think that ableism can’t be traumatic.

Finally, I felt I needed to include a celebrity. I’m choosing Helen Keller. I don’t know that much about her, but I do know that she was an important women’s rights activist. I love many quotes from her too.

CP Day

Yesterday, I heard about an event on November 3 that I was immediately interested in. It’s the Dutch national CP day organized by BOSK, the country’s charity for people with physical disabilities.

For those not aware, CP is an abbreviation of cerebral palsy. Cerebral palsy is a movement disorder caused by brain damage sustained in utero, during birth or in a child’s first year of life. In my own case, I had a brain bleed shortly after birth.

The thing is though, I was never told that I have CP. My parents just told me I’m clumsy. I did get adaptations early in life, such as a large tricycle. I also had lots of physical therapy. When I was around nine though, my parent discontinued my specialist appointments. Even when I developed scoliosis in adolescence, they didn’t tell me. Scoliosis is a common consequence of hemiplegic (affecting one side of the body only) CP.

Last year, I asked my GP about it and was told I have acquired brain injury. Usually though, when someone acquires their brain injury in the first year of life, it doesn’t “count” as ABI. Instead, diagnoses are then made based on symptoms, such as CP in the case of movement difficulties.

CP is classified in five levels of severity. Obviously, since I don’t even know whether I was diagnosed with CP as a child, I’m not sure of my level either. I would have to guess I’m probably level 1 or 2, which are the mildest levels.

CP is not progressive and yet in some ways, it is. The brain damage that causes it doesn’t get worse, but adults can experience worsening pain, muscle stiffness and symptoms related to overuse and overcompensation.

On the CP event, there’ll be various workshops for adults with CP and parents of CP children. The morning workshop that most appealed to me, is about overload. I’d love to explore this from an a CP perspective rather than an autism perspective.

In the afternoon, the workshop I’m wanting to attend is on nutrition. A dietitian will speak about nutritional guidelines for people with CP. While CP affects movement in the limbs mostly, it can also impact on one’s gastrointestinal tract, because after all these are muscles too. I suffer with both constipation and reflux, which will be discussed.

Obviously, I still feel a little self-conscious about going due to my uncertainty about my diagnosis. Because I am sure I had a brain bleed in infancy, my main concern in thsi respect is that I’m not “bad enough”. My parents at one point tried to get me into a school for the physically impaired and were told (or so ‘ve heard) that I wasn’t disabled enough. Now of course I don’t mind not being that disabled, but then of course I shouldn’t be going to an event like this.

Seven Things I Wish My Unsupportive Parents Understood About Me

I just read BPD Bella’s post about ten things she wishes non-borderlines knew about her. I have only some BPD traits and couldn’t relate to everything she describes. However, this post inspired me to do my own list. I’m dedicating this list to my parents by sharing some things I wish they understood about me. For those who don’t know, my parents are particularly unsupportive of my disability experience.

1. I am not “just blind”. I know that many blind people like to minimize the impact of their disability, to prove that they’re competent adults, blindness and all. My mother at one point told me about one of my sister’s college friends, who is blind. She then remarked she wished every blind person had the same abilities. That’s not how it works. But guess what? Sighted people vary in their abilities and difficulties too.

2. My needs are valid. I wasn’t being “manipulative” when I threatened suicide in 2007 while living on my own. I was desperate. If I had really been able to cope, I would have. Similarly, I’m not being “manipulative” by trying to get into supported housing now. No, I’m not in a suicidal crisis on a daily basis anymore, like I was in 2007. However, I want to prevent it from getting that far.

3. If you want me to have a skill, teach me. This is too late, since my parents should’ve gotten this message when I was young. They expected me to be able to live fully independently right out of high school in 2005, though I didn’t have most daily living skills. I appreciate how hard it was for them to teach me growing up, but that’s no excuse to drop the ball.

4. A family is not a business. One of the reasons my parents didn’t teach me independence, was that it got in the way of them running their family efficiently. That’s not an excuse.

5. Not everything is my IQ. My parents are convinced that I am such a genius intellectually that I should be able to use it to overome all of my difficulties (except maybe my social ineptness). Also, this genius IQ enables me to manipulate the world into believing what I want them to believe, which is apparently that I’m weak and dependent and need lots of care. (I am not trying to say needing lots of care makes a person weak and dependent.) No. I would’ve graduated university and gotten a job if I could.

6. Depression is real. Some professionals believe that my childhood irritability stems from depression. I’m not sure that’s entirely true, but it’s possible. I definitely suffer from depression on and off in adulthood. My parents instead say it’s an attemtp on my part to make other people feel miserable, presumably because I refuse to accept the fact that I’m blind. Well, going blind can be traumatic and is not something you “just need to accept”.
Besides, depression is an illness, not a weakness or choice. When depressed, I do make other people feel miserable, but it’s not because I want to.

7. I am an adult, I make my own life choices. In 2006, my parents threatened to abandon me over my wanting to delay university one year. In 2008, they showed up at my hospital ward to take me home with them, because they didn’t agree with the social worker’s plan for my follow-up care. I’m pretty sure that, if I go into supported housing, they’ll try to guilt trip me into not doing it. I couldn’t handle that in 2006. I could in 2008. I am pretty sure that, should they decide to abandon me for good this time, I’ll be able to handle it.

I see this list sounds rather accusatory towards my parents. It is. I don’t even intend for my parents to read it. I know that I’m past setting things straight with them. They won’t change. Besides, my childhood and early adulthood won’t change. I can change to an extent, but I doubt this will lead me closer to my parents. I don’t care.